Lets begin from the beginning.....
We were kinda confused where to go and I had written it down..(what dept) but if ya know me and my "lists" they are always forgotten even though I obsessively write them....
BUT we found the Speech/Vision/Hearing etc dept....whew. and therapist was there waiting for us! We were escorted to Radiology...a familiar place from over a year ago when we were getting madie's MRI....
Well we sat Madison in this upright chair thing...made of wood and some padding...she sat strait up like a big girl and swung her little feet...Thank GOD they did not have to strap them down! let her feet and legs move freely and just a belt thing to hold her in....
The therapist began to mix her Bananas and her pediasure separately with the "barium" a chalky white stuff....and adds a thickening agent as well...making the stuff look like glue... smelled a bit like the Metamucil stuff...(when I was pregnant I got fiber by taking that stuff....yuck)
SOOoo she mixes this stuff up nanas in a cup and shake in a bottle..
While she was doing this Miles was playing with her and she was giggling...she was in a killer mood!! alert...happy...interactive.....
We all put on super stylish lead vests and a really smart Asian guy came in..."he was the radiologist"
We wheeled over madie in her little chair to the machine and they instructed me to give her a spoonfull of the pure'...She did AMAZING! a little fuss in the beginning but she did all they needed to see...! the bottle feeding was hard...it was just awkward she was not about to get that down so we just oral syringed some liquid in her mouth and that was all they needed to see.
Barium was all over..yucky yucky.
When the test was over she was happy as a clam....we had to wait a few minutes and I wiped her up and we talked with the therapist who says she was happy that they saw no reason for concern...recomends speech/feeding therapy...says she certainly has a delay in the eating dept...but we can work with her...she will inform the therapy center near our house and we will probably get a call so we can get in...im kinda excited about it!!
Seizures have been few....a few days had passed since a biggie and just this AM she had a big one...I maybe blame giving her meds a little later than usual....dunno?
We are having problems with her meds...her blood work came back twice already with elevated liver....THE ONE drug that seems to be working is messing with her liver....
I sugested than MAYBE we go down further on her Zonegran...well I was told that Zonegran doesn't effect the liver...only kidneys..."only kidneys folks..dont be alarmed" GAH!!!
Soooooo we went down on the Depakote to our 3ml 2x daily and went down to every other day 0f her Zonegran...to get her appetite better....cant we just get rid of it!!??? ugh.
I have read that just bringing in other drugs WITH depakote can effect the liver...not just the depakote alone!!(which can too don't get me wrong)
dangit I just dont know....maybe we will go with the other drug...Lamiktal?? I think it was called....but we chose Depakote instead.....I wait to hear from neuro about her blood work we had done on Tuesday....they had the results but had yet to talk to the doc when we stopped by yesterday after her barium...."we were in the area" we said....
Well I guess that is all....I will keep u posted on what the doc says today about her meds...
MADIE you need to gain weight!! taking in more Oz wise but food continues to be fought over...gettin there
Here is a funny picture for you....this in in my bathroom....I had a pot with "cat grass" growing in it...its a real sunny window sill and the cat eats this stuff like its drugs! I figured I would let it get sun so it could re-grow....well kitty kitty found her grass......
LAST time I buy it folks!! GAH!! I was so mad...I knew that our cheapo vaccum had just kicked the bucket....and I was sweeping like crazy...fuzz and hair were getting crazy....I told hubby I was going to target and getting a new vaccume..!!
This very same night Hubby went and bought me DYSON.......
He figured "what the hell, if your going to get a cleaning machine...THIS IS THE ONE!"
I was squealing with delight!! hahahahahaha
2 comments:
So glad to hear the study went well! I know you're thrilled...and speech/feeding therapy is a great idea! I'm still counting down til Austin gets old enough for speech therapy.
A DYSON??! My, my...what a sweet hubby! I could definitely use one of those! :-D
Hooray that test is finally over and I'm so glad she did well for it. That always makes it go more smoothly ;)
So glad the results were good as well.
And ewwwww a Dyson now thats a good hubby! Way to get on the good side ;)
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